Our Syndrome. Your Information.

Our best hope for finding new treatments and raising awareness is your participation in JS-LIFE, the JSRDF patient-centered registry.

Whether you are affected, a caregiver, or related to someone who is or was affected, your information* could be the key. Please take a few moments to answer a few questions today.
*only one survey is necessary per affected individual


Joubert Syndrome UK




Here is a full list of websites that families have found useful, click on the links below to view the relevent list.

Click on the images to visit the sites.

RDA | Print |

Riding for the disabled, find a local group to benefit from horse therapy.

RNIB | Print |

There are around two million people in the UK with sight problems and RNIB (Royal National Institute of Blind People) is the leading charity offering practical support and information to anyone with a sight problem. Our pioneering work helps - not just with braille, Talking Books and computer training but with imaginative and practical solutions to everyday challenges.

Seenin | Print |

Practical stylish garments to aid daily living for adults and children with disabilities

Special Kids In The UK | Print |

Special Kids in the UK have a vast amount of resources and bring families together for friendship and support.

STEPS | Print |

Charity that provides a FREE Developmental Toy and Switch Postal Lending Library service to individual children and hospices.

Rifton | Print |

Rifton manufactures walking frames,standing frames, specialist chairs, adaptive tricycles, wheelchair desks, bath chairs and toileting aids.

Rompa | Print |

Sensory toys, furniture and more

Southerland Society | Print |

Osteopathy is a system of diagnosis and treatment which works with the structure and function of the body. Cranial osteopathy is a refined and subtle type of osteopathic treatment that encourages the release of stresses and tensions throughout the body through balancing the body and cerebral-spinal fluid. It is a very gentle approach and may be used in a wide range of conditions for people of all ages, from birth to old age.

Special Needs Kids | Print |

Special Needs Kids is an information and shopping directory for parents and carers.

Trabsack | Print |

The award winning Trabasack is a travel bag with a firm flat tray surface on one side and a removable bean bag cushion on the other.


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Information contained on this website is not intended to replace information you have received from Doctors or other Health Professionals.
You should always consult with a Medical Professional for medical advice.
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